Wait 4 flare to happen B4 starting Kevzara or ?

Posted by boomermeg @boomermeg, 3 days ago

My Rheumatologist wants me to start Kevzara. She's concerned I'll have problems with flares as I taper off Prednisone because I had to increase from 15mg to 20, to 25mg to get full relief, and my PMR pain and symptoms were really brutal and incessant from Mid-March until I was finally diagnosed 7/31/26. The pain woke me up every single night. I had to get out of bed and sit upright on couch with pillows under each arm to try to sleep.
It would start every night around 1-3am, and the pain/symtoms lasted all AM and into the early afternoon before they'd start to wane and then do it again every night. So, it was very severe for many months before I got diagnosed and treated. So that's a reality I sure don't want to repeat if I can help it. I've just tapered from 25mg to 22.5, to 20mg last Saturday. Have a lot of my old chronic pain back and can "feel" some of the PMR areas but no PMR pain or symptoms.
Before you can start Kevzara, you need to rule out multiple diseases.
I already did the TB,HIV,HEP B & C blood tests, all negative. Waiting for prior authz from my insurance. Also, I'm scheduled for Endoscopy (but not until Nov, to be sure I don't have any ulcer, GI bleed, or Celiac disease). I'm going see if I can get in sooner than November, so I'll know if I can take Kevzara or not.
Another reason for Endoscopy is my Iron Saturation had gone down to 9. Need to know if there is bleed causing that. Had to get 5 a iron IVs. Or was it from all the inflammation?
Also, Kevzara is very expensive, even though I know it'll be whatever my RX deductible is for the year then everything is free. It's just hard to think of it as OK to spend a lot of money if no flares yet. I don't want any flares, ever, of course, but need your feedback if you would. Would you wait to see if you actually get a flare first before starting Kevzara? There's possible side effects for it too. Thank you all so much for all your help and input. I've learned so much from you. Blessings.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for kjoed53 @kjoed53

Sometimes I think that the 25mg prednisone I was on curbed my osteoarthritis pain enough where I hurt myself without knowing it. The taper brought that pain back, but I feel more pain in my knees than I remember. Either that or I just need to get used to it again. I'm not supposed to take ibuprofen because of interactions with other meds and Tylenol does very little for me so I have little choice but get used to it now.

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@kjoed53
I'm sorry to hear about your knee pain. I have bad knees too. Osteo also. I don't know the severity of your pain, but I keep seeing someone post about Tylenol Arthritis. I've never tried it. I have tried Arthritis pain cream and the little pellets made by a Homeopathic company called Boiron. They aren't strong enough for me, but might be something to look into. The pellets have different natural plants that help. I've used their Arnica gel (topical) and Arnica 30C pellets for years for swelling/bruises.
Everytime I know I'm having a surgery or blood test I take the pellets 3 days before and use the gel topically afterwards. Like the spot where they drew blood. It prevents (or can reduce afterwards) the big ugly bruises I get nowadays. The pellets help a bit with pain if it's not too bad. The pellets 3 days before kept me from getting bad bruising on my face from a dental gum graft. It really worked.
Due to all my chronic pain I've been seeing a pain specialist many years. He's a "physical medicine and rehabilitation Doctor." RX pain med helps. Have you asked your PCP re pain medication? If it's bad enough. Constant pain, as we all know, is totally detrimental to so many aspects of our body, life, health.
If you can't sleep, your body can't repair, so whether it's the PMR pain or other severe pain, we need relief. Not just for sleep obviously, but it is a huge problem when constant pain is present. I hope you find some relief in any form. I still live with some pain and don't take it if I don't need it. It was nice not to feel all of it while it lasted :-), but alas, reality calls! But I'll take this pain any day over the PMR pain.
Blessings.

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Profile picture for boomermeg @boomermeg

@kjoed53
I'm sorry to hear about your knee pain. I have bad knees too. Osteo also. I don't know the severity of your pain, but I keep seeing someone post about Tylenol Arthritis. I've never tried it. I have tried Arthritis pain cream and the little pellets made by a Homeopathic company called Boiron. They aren't strong enough for me, but might be something to look into. The pellets have different natural plants that help. I've used their Arnica gel (topical) and Arnica 30C pellets for years for swelling/bruises.
Everytime I know I'm having a surgery or blood test I take the pellets 3 days before and use the gel topically afterwards. Like the spot where they drew blood. It prevents (or can reduce afterwards) the big ugly bruises I get nowadays. The pellets help a bit with pain if it's not too bad. The pellets 3 days before kept me from getting bad bruising on my face from a dental gum graft. It really worked.
Due to all my chronic pain I've been seeing a pain specialist many years. He's a "physical medicine and rehabilitation Doctor." RX pain med helps. Have you asked your PCP re pain medication? If it's bad enough. Constant pain, as we all know, is totally detrimental to so many aspects of our body, life, health.
If you can't sleep, your body can't repair, so whether it's the PMR pain or other severe pain, we need relief. Not just for sleep obviously, but it is a huge problem when constant pain is present. I hope you find some relief in any form. I still live with some pain and don't take it if I don't need it. It was nice not to feel all of it while it lasted :-), but alas, reality calls! But I'll take this pain any day over the PMR pain.
Blessings.

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@boomermeg
I'm leary of taking many of the natural remedies because I'm on meds for AFib, PVCs and PACs and I find more than a few things affect me negatively. I do use bio freeze, and have been using it for many years with no ill effects. I also take 3mg LDN at night. I started taking it as a bridge from prednisone to kevzara but it helps me sleep better so I will probably continue taking it even after the kevzara takes full effect.

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Profile picture for petermccarville @petermccarville

@boomermeg . Glad you are looking into Kevzara. It takes a while to work but does work for many people. Also it is good to start the process early in your PMR journey so you have it ready and waiting if you decide to do it. You are still in the early days and on a fairly high dose of pred. I would try to get a dose and schedule on pred that works. Your post sounded like it is still not quite working for you. I am one of those believers that prednisone should take close to 100% of the pain away. Don't get me wrong, I still felt strange and not great on high doses of prednisone (for me 15 mg was the highest)but pain free was an amazing experience. In fact, I had no pain from any sort of activity my first two months. Now I know how some get to live their lives (ie pain free) and I can at least remember that feeling with a sort of nostalgia and hope that in my next life I can be pain free like some of the lucky people :).

It took me about two to three months to get insurance to authorize Kevzara. Lots of back and forth and denial then OK then denial again, etc. We were finally triumphant and I had it (kevzara prescription) in my back pocket, so to speak. I was around 9 mg of pred at that time and went to the Dr for a check in and progress report. We were planning on incorporating Kevzara at that meeting and actually decided against it. The main reason was that Prednisone was working and my taper was working. I had had no flares up to that point (never did) and thought that by the time prednosone was done I would be barely feeling the benefits of Kevzara. We decided to shelve the option and never did act on it. I tapered in 10 months without flares.

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@petermccarville Good for you that you didn't have to do the kevzara! Substituting one poison for another is a terrible part of this condition.

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Profile picture for stonewheel @stonewheel

@boomermeg I certainly know your waking up in the night with severe hip pain. Strangely, I don’t cry due to my own pain, but I do cry when others are in pain. I hope you don’t have an internal bleeding issue. I’ve learned that Prednisone is a “go-to” medicine for some types of bleeding disorders. Dr. Megan ( the Prednisone/PMR YouTube pharmacist took Lrednisone long term for an internal bleeding disorder.

Having mentioned that, Prednisone may be a good fit for you.

This is just my opinion from my personal experience with Prednisone and Kevzara, and learning as much as I can from others for my own treatment.

If you do not have any seriously bad side-effects from Prednisone, stick with it only.
(Me, I couldn’t because of the side-effects and I was probably started at too high a dosage. It made me feel like Superman for a few weeks, but also clotted my blood in concert with another prescription drug I was given for a Prednisone side-effect that was horribly and painful, that also clots blood. I ended up with hospitalized for 5 days and have to take Eliquis now as long as I’m on Prednisone.

Kevzara is not a “magic pill” medicine for me. I use it to get off Prednisone (now alternating days of .5mg and 0 mg, for another week to ten days.
Kevzara will allow me to get off of 4 prescription drugs to counter the Prednisone side-effects and the 4 OTC supplements taken at precise times of the day so they don’t interfere with each other. A real balancing act.)

Kevzara, for me, is not as effective at relieving all the pain like Prednisone alone did.
Kevzara works differently and targets Interleukin (IL-6), as you know. I can feel the difference in the way it works. I’ve wondered/considered if I would have to take both if I’m to feel normal again but it’s really not an option. I’m just stuck with some hip pain and slight shoulder pain, but sleep helps relieve both.

Kevzara has a half-life of 21 days, so it takes 6-8 weeks to build up a maintenance amount in your system. (Thus the need for something else in the beginning, like Prednisone or glucocorticoids or cortico steroids…)

For me, I would have remained on Prednisone all by itself because of its total effectiveness at eliminating the PMR pain. It just happened to be “mean” to me in so many other ways.

Prednisone is pennies per day.
Kevzara is $5k per month. If you have good insurance, you’ll pay your deductible the first injection and the rest of the year it costs nothing out-of-pocket.
You insurance will apply for and get the “manufacturer’s assistance discount” of $1k/month. If no insurance, one has to apply on their own for that discount. Crazy, but that’s the way it is in the USA presently.

There are some other IL targeting inhibitors that are being tested, specifically IL-17 and IL-23 proteins. One of which may be FDA approved for PMR soon, as trials are currently underway.

If Prednisone alone works for you and has no ill side-effects, I’d suggest that you just take Prednisone only.
(It may be prescribed to you for an internal bleeding disorder anyway. Just guessing though.)

I would not take an expensive drug that only works just okay vs an inexpensive ready-available drug that works great (provided it causes you no bad consequences.) I just have no choice.

I feel your pain, physically and the mental struggles of a successful for you treatment plan. One that we hope will lead to a drug-free painless back-to-normalcy again.

I wish you the very best of success. You know that. Keep us informed of your status and progress. We all learn from each other.

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@stonewheel
Thanks for your reply and sharing your experience. It all helps. For me it was shoulder and upper body pain that woke me up every night. The hips/thighs were involved too but didn't wake me up.
I hope I don't have any ulcer too. It's possible, even likely that the critically low iron saturation was from the inflammation bringing on hepcedin which blocks available stored Iron from being used by the body. The GI Dr. also wants to rule out Celiac disease (which causes iron issues too) and rule out ulcer etc. It was my PCP NP who was initially concerned it might be a GI bleed, but that was also prior to PMR diagnosis. So, unfortunately, the only way to rule out ulcer is Endoscopy and the celiac disease blood tests were negative, but one gave her enough to say a biopsy is only sure way.
I agree about less medications is always better. It's been OK so far tapering from 25 to 20mg, but as some others have mentioned, I'm still on high doses yet. It seems it's the lower dose area (10mg or so) where it can get trickier re flares. With what input I'm getting so far, and my own, I'm getting the Kevzara Rx lined up because I hear Insurance often fights authorization and it can take time. They also might require trying another medication first and failing that prior to allowing it.
Mine is a Medicare advantage plan and any government insurance isn't eligible for a manufacturer discount from what I've read, so that won't help, but thanks for the suggestion.
So, for now, I am just taking Prednisone. I've only been on it since 7/31, so it's early in terms of getting adverse side effects and can still happen but hopefully not.
Thanks again. Blessings.

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Profile picture for kjoed53 @kjoed53

@boomermeg
I'm leary of taking many of the natural remedies because I'm on meds for AFib, PVCs and PACs and I find more than a few things affect me negatively. I do use bio freeze, and have been using it for many years with no ill effects. I also take 3mg LDN at night. I started taking it as a bridge from prednisone to kevzara but it helps me sleep better so I will probably continue taking it even after the kevzara takes full effect.

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@kjoed53
It's better to be leery of anything when you're not sure if it'll interact. That's funny! I'm a Biofreeze stock owner :-). I should be!! I swear by it too, and have the roll-on type handy, including my purse. It's only temporary but it does work for me too. I just started taking .5mg melatonin along with magnesium glycinate 1 hour before bed and it's really improving the quality of my sleep. I think it'll take a few weeks for the full benefits of melatonin. I just read an article re melatonin can help pain issues (not severe surgical, but musculoskeletal type) because improving sleep helps break the pain cycle.
I think the 5mg reduction in Prednisone probably helps too. I just looked up LDN. Sounds like it can be very helpful. It mentioned vivid dreams possible, same with melatonin. That happened to me the 1st night I took melatonin. Dream so vivid I knew it was the melatonin. I searched about it and found out you should take melatonin at least 1 hour before going to bed to avoid the vivid dreams. It works. I'm glad you've got Biofreeze. It's a great product. I prefer the "green" one for potency. Wish it wasn't green but for some reason the clear colored one doesn't work as well for me. Go figure! Blessings.

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Profile picture for boomermeg @boomermeg

@kjoed53
It's better to be leery of anything when you're not sure if it'll interact. That's funny! I'm a Biofreeze stock owner :-). I should be!! I swear by it too, and have the roll-on type handy, including my purse. It's only temporary but it does work for me too. I just started taking .5mg melatonin along with magnesium glycinate 1 hour before bed and it's really improving the quality of my sleep. I think it'll take a few weeks for the full benefits of melatonin. I just read an article re melatonin can help pain issues (not severe surgical, but musculoskeletal type) because improving sleep helps break the pain cycle.
I think the 5mg reduction in Prednisone probably helps too. I just looked up LDN. Sounds like it can be very helpful. It mentioned vivid dreams possible, same with melatonin. That happened to me the 1st night I took melatonin. Dream so vivid I knew it was the melatonin. I searched about it and found out you should take melatonin at least 1 hour before going to bed to avoid the vivid dreams. It works. I'm glad you've got Biofreeze. It's a great product. I prefer the "green" one for potency. Wish it wasn't green but for some reason the clear colored one doesn't work as well for me. Go figure! Blessings.

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@boomermeg
I had some very vivid dreams the first week on LDN. Now it's only occasionally but I can't say for sure that it's from LDN. Be careful with the melatonin. New studies are finding a possible link between long term use of melatonin and heart failure. Studies are like statistics though. They can be distorted to fit the agenda.

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Profile picture for kjoed53 @kjoed53

@boomermeg
I had some very vivid dreams the first week on LDN. Now it's only occasionally but I can't say for sure that it's from LDN. Be careful with the melatonin. New studies are finding a possible link between long term use of melatonin and heart failure. Studies are like statistics though. They can be distorted to fit the agenda.

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@kjoed53
Yes to studies to fit agendas.
I only take .5mg, 1/2 of a 1mg tablet. Don't want or need more.
Guess I'm a lightweight:-).
Thanks for mentioning it. Blessings.

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Profile picture for stonewheel @stonewheel

@boomermeg I certainly know your waking up in the night with severe hip pain. Strangely, I don’t cry due to my own pain, but I do cry when others are in pain. I hope you don’t have an internal bleeding issue. I’ve learned that Prednisone is a “go-to” medicine for some types of bleeding disorders. Dr. Megan ( the Prednisone/PMR YouTube pharmacist took Lrednisone long term for an internal bleeding disorder.

Having mentioned that, Prednisone may be a good fit for you.

This is just my opinion from my personal experience with Prednisone and Kevzara, and learning as much as I can from others for my own treatment.

If you do not have any seriously bad side-effects from Prednisone, stick with it only.
(Me, I couldn’t because of the side-effects and I was probably started at too high a dosage. It made me feel like Superman for a few weeks, but also clotted my blood in concert with another prescription drug I was given for a Prednisone side-effect that was horribly and painful, that also clots blood. I ended up with hospitalized for 5 days and have to take Eliquis now as long as I’m on Prednisone.

Kevzara is not a “magic pill” medicine for me. I use it to get off Prednisone (now alternating days of .5mg and 0 mg, for another week to ten days.
Kevzara will allow me to get off of 4 prescription drugs to counter the Prednisone side-effects and the 4 OTC supplements taken at precise times of the day so they don’t interfere with each other. A real balancing act.)

Kevzara, for me, is not as effective at relieving all the pain like Prednisone alone did.
Kevzara works differently and targets Interleukin (IL-6), as you know. I can feel the difference in the way it works. I’ve wondered/considered if I would have to take both if I’m to feel normal again but it’s really not an option. I’m just stuck with some hip pain and slight shoulder pain, but sleep helps relieve both.

Kevzara has a half-life of 21 days, so it takes 6-8 weeks to build up a maintenance amount in your system. (Thus the need for something else in the beginning, like Prednisone or glucocorticoids or cortico steroids…)

For me, I would have remained on Prednisone all by itself because of its total effectiveness at eliminating the PMR pain. It just happened to be “mean” to me in so many other ways.

Prednisone is pennies per day.
Kevzara is $5k per month. If you have good insurance, you’ll pay your deductible the first injection and the rest of the year it costs nothing out-of-pocket.
You insurance will apply for and get the “manufacturer’s assistance discount” of $1k/month. If no insurance, one has to apply on their own for that discount. Crazy, but that’s the way it is in the USA presently.

There are some other IL targeting inhibitors that are being tested, specifically IL-17 and IL-23 proteins. One of which may be FDA approved for PMR soon, as trials are currently underway.

If Prednisone alone works for you and has no ill side-effects, I’d suggest that you just take Prednisone only.
(It may be prescribed to you for an internal bleeding disorder anyway. Just guessing though.)

I would not take an expensive drug that only works just okay vs an inexpensive ready-available drug that works great (provided it causes you no bad consequences.) I just have no choice.

I feel your pain, physically and the mental struggles of a successful for you treatment plan. One that we hope will lead to a drug-free painless back-to-normalcy again.

I wish you the very best of success. You know that. Keep us informed of your status and progress. We all learn from each other.

Jump to this post

@stonewheel
Just a short addition to your post... I have Cigna insurance through my wife who is still working, and I had to apply through the manufacturer for their copay card. Cigna uses an online pharmacy for kevzara and they have a go between that works as a patient advocate to the pharmacy. I was told not to put any payment information on the pharmacy site and if I ever received a bill to let them know.

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Profile picture for kjoed53 @kjoed53

@stonewheel
Just a short addition to your post... I have Cigna insurance through my wife who is still working, and I had to apply through the manufacturer for their copay card. Cigna uses an online pharmacy for kevzara and they have a go between that works as a patient advocate to the pharmacy. I was told not to put any payment information on the pharmacy site and if I ever received a bill to let them know.

Jump to this post

@kjoed53
Thanks so much for posting this. While my insurance is Medicare Advantage, not private like Cigna, it's still good to know about for anyone with private insurance trying to get the manufacturer discount. I appreciate it. Every bit of information can help someone here. Blessings.

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Profile picture for boomermeg @boomermeg

@kjoed53
Thanks so much for posting this. While my insurance is Medicare Advantage, not private like Cigna, it's still good to know about for anyone with private insurance trying to get the manufacturer discount. I appreciate it. Every bit of information can help someone here. Blessings.

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@boomermeg
I think most people here don't have private insurance but if it helps one other person, it's helpful. The one thing that is relevant to everyone is that if you save a payment option on the pharmacy site, you run the risk of them charging you without your knowledge or approval.

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